ImPatient: It's an exciting/sad/frustrating/optimistic time for patient leadership

I’m excited: Mel Ball will soon become lived experience director at the Midlands Partnership Trust. This executive level post is the first time a mental health organisation has created such a role. Anyone out there following suit?

But: As one brave experiment begins, another one fades away.

I’m sad: Sussex MSK Partnership (Central), the organisation with the guts to pioneer the first patient director role in the NHS has let the role go. When I left a couple of years ago, two patient partners from our pool of patient improvement partners stepped into the fray. But that approach to patient power sharing at senior decision-making level – lauded by the Care Quality Commission and The National Institute for Health and Care Excellence – has been quietly dropped.

I’m frustrated: As a joke, I tweeted recently that the new NHS Improvement Board was recruiting for a national patient (lived experience) director. This was out of annoyance that no national agency has yet recruited for such a role. Many fell for it and were excited by the possibility – that’s telling. Still time to change your mind, NHS England?

I’m optimistic: In the research world, a global programme, GALENOS, is developing “living systematic reviews” (garnering up-to-date relevant research findings) in anxiety, depression and psychosis and is recruiting people to be on its Global Experiential Advisory Group (chaired by yours truly). Meanwhile, long-time campaigner for the rights of people who use services Peter Beresford charts the origins of user-led/ survivor research.

A couple more academic papers on engagement in research, the first reflecting on a NHS diabetes prevention programme and how it involved patients and the public; the second looking at some of the pitfalls of patient engagement in research more generally. The BMJ has published what it calls a “systematic scoping review” of patient engagement in the development and delivery of healthcare services. If you want to keep up to date with this sort of thing, the journal Health Expectations is the place to go (and it’s open access).

Makes me sad that we couldn’t reflect properly upon the patient director model at Sussex before it got dismantled. However, I’ve written several informal reflections on that.

As I’ve said before, much of the engagement industry – often termed co-production (though not always living up to that billing) locates itself at local level. Much activity is focused on specific one-off improvement projects (often not sustained or scaled). But at least there’s lots of good work being done by passionate people.

Is this energetic local activity mirrored in the policy world? No. It’s almost impossible for patient leaders (remember the definition “people who’ve been through stuff, who know stuff, who want to change stuff”) to get a word in edgeways. Look at birthday celebrations for NHS75. Media pieces have been reserved for the usual suspects – assorted policy wonks, many who’ve never worked in the NHS – to laud the institution and/or to preach about how it can be “defended” or “saved”. Lots of walk-on parts for patients with stories of being “saved” by the NHS. But us lot? People who’ve got things to say about system change: Nada.

The Centre for Mental Health tried though. Its latest Festival of Ideas webinar brought together people affected by mental health conditions on what we want to see changed in services. As the debate went on, it struck me how those of us with mental health problems or seeking more power are not happy-clappy for the NHS. In some ways, 75 years of the NHS has merely cemented institutional privilege on behalf of the medical profession, hospitals and pharma. And, as one panellist noted, has reinforced racism – “there were mainly black men on the ward 10 years ago. There are mainly black men on the ward now”. But to speak out like this is to risk being accused of betrayal.

Advocates find their ways to infiltrate as best they can. A recent report on variability in palliative care services marks out in quite painful detail the need for these services, and how they should be made more equitable. It also captures the different perspectives of service providers and the family of the patient whose care led to the investigation. On another website, the family has been able to freely express their own views on the wider learning they believe services can gain from their experience. The patient family voice rings loud and clear. The family hope it will be heard and responded to.

It was interesting to see a Guardian article on a non-evidence-based approach to treatment for ME having to be corrected as it ran counter to the facts and people’s experiences.

Let’s leave on a constructive note: this article discusses practical things you can do to be a “hands-on” citizen, and much applies to “patient leaders” – this work is still the right thing to do, regardless of your expectations of impact.

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